Update on my Dad -- this disease is garbage

24

Comments

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    I just want to say that you

    I just want to say that you would be surprised by the many doctors who think there is no treatment for RCC.  Still, I would think a lung specialist would know more.  

    I hope you share with your dad how people are surviving many years here and on SP.  I think when you are newly diagnosed and just beginning treatment is the hardest time  emotionally.  There is so much to learn.  

    I would also like to add that I truly enjoy the visits from social workers.  But they aren't all the same.  They should be a very good resource for you.  

  • LeeAllen
    LeeAllen Member Posts: 40
    I just received a text from

    I just received a text from my mother.

    'Tests' (I am assuming the CT Dad did Monday) showed Dad's bone met's have shrunk 'way down' and that the spot on his kidney is barely there!!!!

    Dad's troubles stem from fluid in his left lungs.

    The Lung Dr. (how he would know, I have no idea) said that Dad's issues can be chalked up to Cabo side effects, except for the lung fluid.

    We still have to get this lung deal taken care of, but that news about the cancer itself...WOW.

    They handed us hospice materials twice yesterday (from this same lung doc).

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    This should

    Be a little comforting to all of you.  Never give up hope- sometimes in the medical field when there are multiple Dr's you get multiple opinions-Not always good.  Always be your own advocate- this is surely good new, may it continue. June

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    So glad to hear the meds are

    So glad to hear the meds are working. I hope your Dad is encouraged by the news. I pray your Dad stays strong mentally, because the body will follow. I also hope he re-gains his physical strength. Take care.

  • LeeAllen
    LeeAllen Member Posts: 40
    Thanks AnnissaP and Gtng!

    Thanks AnnissaP and Gtng!

     

    He has fluid IN a lung, as opposed to outside. He has had fluid outside of his lungs pulled 3 times since May. 

     

    They pulled a bunch of it out and they had it slowly pulling out overnight. Looks like brake fluid. 

     

    No wonder he'd get so out of breath from merely standing up or walking a short distance with his walker! He had a lung that was basically drowned! 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Well glad to know the

    Well glad to know the treatment is working on the cancer. YAAY!

    Fluid in lungs is serious too. Often there is a battle between the quality of life and effects of both cancer and its treatment. See if the pulmonologist knows what is causing the fluid and if it will continue fillling up or stop. 

    Remember, there also is a spiritual journey doctors cannot predict!

    But be glad~yAAY!

    Healing hugs,

    Jan

     

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    Just like what the Onc was

    Just like what the Onc was saying, the battle is not done. I am from Canada, in our Canadian forum, there is a member who has stage 4 RCC and is still NED for over 15 years! Also, make sure you consult with the primary treatment team for advice since the docs and nurses from the treatment team know about the potential side effects from the treatment and will not mistaken it as something else. Sending good karma.

  • LeeAllen
    LeeAllen Member Posts: 40
    edited August 2018 #29
    Well the speech and throat

    Well the speech and throat lady has found that Dad is too weak to swallow. It is taking him so long he is just giving up trying to eat food bites. 

    And there was a small gap in his esophagus they hope the remedied with the recent lung fluid procedure. 

    He has swallowing exercises and Dr. will talk to him about a feeding tube. Mom says they are in for a long stay in the hospital. 

    Dad hasn't had nutrition all week, so of course he is even weaker with all he has been through! 

    Mom then said he has to make up his mind about the tube. I asked her if the feeding tube would allow him to gain stregnth to then eat on his own, and she says the speech pathologist thought so, so then I said "Well what is there to make a decision about then since this is temporary!" 

    We were so excited about the Cabo working so well, but we have such a long road ahead! 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Aww.. this is a process, a

    Aww.. this is a process, a journey, not only through the medical/treatement but lessons we all need to learn.

    Right now the focus is on his comfort, breathing, swallowing issues.

    Are they giving him IV fluids? Again, don't worry so much about his eating than his regaining his strength.  He has some serious issues to overcome first, right? Feeding tubes are not always comfy but necessary. 

    Healing Hugs,

    Jan

  • LeeAllen
    LeeAllen Member Posts: 40
    They have been giving him IV

    They have been giving him IV fluids too. 

    He's pretty lucid through all this except when he is sleeping. Heh. of course. He seems to look and be better to me each day he is here. But he arrived awfully sick. 

    Mom and Dad were UP yesterday when they found out the drugs are working and the CT scan looked awesome, then they found out about the feeding tube and that has knocked the wind out of their sails. 

    My family doesn't know about medical stuff, I think they think a feeding tube makes him into Darth Vadar or something. Like it's akin to keeping a vegetable alive. 

    My aunt is a nurse and she explained it to mom. 

    One thing we ALL need to do is not regard any hospitcal info as gospel except what our Oncologist says. He is the one running the show. He's in and out of there all day checking up on him, and he comes in and summerized everything that is going on and our plan moving forward. 

    Well, our Onc. Doc just came in. Said no feeing tube. We are going to do a liquid diet and Dad has to sit up while eating. 

  • LeeAllen
    LeeAllen Member Posts: 40
    To elaborate, our Oncologist

    To elaborate, our Oncologist doesn't want to put in a feeding tube simply due to the results of a swallow test. Might do it later. (his suggestion was the peg tube) but he wants Dad to sit up and eat. 

  • Amy_Jo
    Amy_Jo Member Posts: 70 Member
    LeeAllen,

    LeeAllen,

    I really hate this disease as well it's cruel. However comebacks are possible. A few months ago I was in a bad place my Mets on my spine had deteriorated my vertabrae so bad I could not walk just trying to reposition my self in bed was excruciating. I had back surgery and started treatment. I have been doing well my most recent scans show my treatment is working. Tell your Dad I love last Man standing I'm looking forward to the new episodes. I hope your Dad gets stronger I had a nephrectomy Left kidney 2 PE's kyphoplasty plasty to my back I just kept praying for strength and stayed positive. I'm sure your Dad is exhausted just be his strength and encourage him to fight. I was beginning to loose hope my mom was a big inspiration for me. Sending up prayers for you and your family. Can I ask your Dad's name so I can pray for him ? 

  • marosa
    marosa Member Posts: 334 Member
    Lee Allen, Im wishing for your dad

    to get better and stronger and that he can go on treatment and overcome this very trying times.  Best wishes for your dad, your mom and you.

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    YAAAY!! See? Take all this a

    YAAAY!! See? Take all this a moment at a time. Helps to be well informed.

    Hope his swallowing issues improves as his physical well being.

    Now BREATHE! We're here for you as you can see, Lee!

    Hugs, Jan

  • shepp
    shepp Member Posts: 11
    edited August 2018 #36
    Yeah, damn loss of appetite...

    I'm in considerably better shape than your Dad, but dealng with loss of appetite and nausea due to Cabo is a constant struggle for me.

    I'd discuss with your father's oncologist whether he thinks dose reduction and/or treatment vacations would help. My doctor is fine with my skipping doses for a couple days (Cabo has a long half-life, so treatment isn't really effected) and it does seem to help me.

    But hey, my main tumor has shrunk by about a third and my bone mets are stable, even necrotic, so at least the stuff works. (For 700 bucks a pill, it should.)

  • LeeAllen
    LeeAllen Member Posts: 40
    Thanks everybody. Last week

    Thanks everybody. Last week Amy_Jo I prayed for you at Eucharist. Forgot your name but I just envisioned your picture! You are around the same age as my wife (pictured in my photo). I just hate that you are having to deal with this. 

     

    They are giving Dad a scope today to see if he has a lung tumor. No tumor showed on the CT they did last week and his fluid tested negative as well so I guess they just want to make absolutely sure. He's had so much trouble with that one lung and fluid on the outside and inside. 

     

    They make due surgery later today to scrape his lungs too. 

     

    Dad gets depressed in the hospital. The lung doc seemed to think he was better yesterday. Dad says he can't really tell either way due to the drugs. 

  • LeeAllen
    LeeAllen Member Posts: 40
    No lung tumor. He has scar

    No lung tumor. He has scar tissue in his lung that is making it harder to expand and take in oxygen. They are going to decide how to treat that. 

     

    The internet isn't very optimistic about lung scar tissue. How don't know how much or anything just yet. 

  • Amy_Jo
    Amy_Jo Member Posts: 70 Member
    LeeAllen said:

    No lung tumor. He has scar

    No lung tumor. He has scar tissue in his lung that is making it harder to expand and take in oxygen. They are going to decide how to treat that. 

     

    The internet isn't very optimistic about lung scar tissue. How don't know how much or anything just yet. 

    Just wanted you to know I was

    Just wanted you to know I was thinking about you and your Dad I hope he is doing better. Prayers for strength and healing for you both. 

  • LeeAllen
    LeeAllen Member Posts: 40
    Thanks so much Amy_Jo, he is

    Thanks so much Amy_Jo, he is having a pacemaker put in in today. He had a several heart episodes in the past. It's just one thing after the other. 

     

    We have an inpatient rehab center to send him to when he gets out of the hospital. 

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206 Member
    Wow thats alot

    To be dealing with.  How lucky your dad is to have such a good support system.  Hope this is the beginning of healing-June